Added: 5 years ago
From: tgrrrl3
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  • i'm a med student studying for boards & had no idea blasto caused skin lesions. in school, we spend so much time learning how this fungus looks under the microscope (any med student can recite the "broad based budding blasto" chant blindfolded) but no one tells us how blasto patients will present. it's a frustrating system. tks for your educational video. glad your son is better. all the best.

  • I searched the web and I think your from winnipeg.. I'm also a winnipeger.. st vital region. I think I got it from on of my school trips though.. took about a year for symtom to show.. and then a year later to finally get the diagnosis... so I'm guessing from start to now is 2 years.. hope your son well

  • my boy got it on a school trip to Kenora. He wasn't correctly diagnosed for 7 months and neared death.

    He is well now, but with permanent damages.

  • I think I got off lucky then, thank god. Doctor asked if I've been to kenora as well. Not really sure if I have :S

  • 2 xrays. 2 ct scans, 2 lung surgries to determine I had this.. I feel for you. Unlucky your son had pain.. my only symtom is coughing blood.. but after my doctors reaction to my second ct scan.. I think it's pretty serious

  • I was just diagnosed for this.. after a year of coughing blood.

    Grrr

  • I was diagnosed with Blastomycosis in May after a surgery on my shin. They removed a golfball size section on my right shin! That was a Tues! By Wed Afternoon they already knew what it was and sent me to Madison! I was 7 months pregnant at the time and by that Fri they had attempted to put me on Amphotericin B ( They a gave me a form of it called Abisome) I had a severe allergic reation to it and almost died.

  • I'm glad to see that Derek is doing better. I was diagnosed with blastomycosis in May, after being sick all winter. My dermatologist made the correct diagnosis after I developed a large growth on my face.

  • Glad to hear you are on the mend from this devious infection. Hope all is well. Thanks for sharing your experience.

  • I'm so glad Derek is doing better. I was diagnosed with blastomycosis in May of this year. I was sick all winter, having severe trouble breathing and coughing up blood. I had several incidents where I passed out and lost consciousness when I was walking. My doctor told me I just had the same flu virus everyone else in town had and told me I would just have to ride it out. Then I developed a large growth on my face and went to a wonderful dermatologist.

  • My family was not as fortunate as your,s. My daughter passed away August 27 2007 from blasto. She was 3 months preg. when she developed headaches. blasto tumor was found after baby was born, removed in nov.06. Headaches continued, drs said she had migraines even after blasto diagnos. Said she was pill seeking and a addict. This went on for six months.many er visits, nothing. August 22 admitted to 1 hosp insurance wont pay,sent to 2nd,3rd hospital in one week, Brain death at 21. Toledo Ohio

  • The Dr.s initially also told me my 12 year old was doing drugs. I am very sorry to hear of your loss and your daughter's needless suffering. Her case sounds as unique as my son's as it seems to have attacked the brain tissue. This is a very rare condition. It is frustrating to deal with amedical system that just won't take it seriously. My heart goes out to your family. Thank you for sharing.

  • I got treated with Sporonox for 6 months at $900 a month. At the end of my treatment, my veternarian told me he could get the exact same medicine from the same supplier for $300 as dogs get blastomycosis all the time, even where I live in Kentucky. Blastomycosis isn't as common here as it is in the Great Lakes region of the U.S. I am glad that Derek survived and hope he continues to progress.

  • Wow... in Kentucky?!

    It seems more rampant than one would first think.

    I feel for you and when you were misdiagnosed.

    Are you the one on that Blast site? I think I have read your story. Derek's is on there too.

    Derek's recovery was and is long.

    Since his pituitary gland is dead from the blasto, it is most difficult to get a 15 year old to take all of his horomones!

  • After some treatment, the lesions got worse and more plentiful. I wound up having more than 53 lesions on my body. It was after the lesions that an MRI revealed a baseball size mass on my upper right lobe of my lung. Doc didn't say, but she leaned towards, cancer or TB. She sent me to the pulmonologist and he almost immediately said he knew what it was but wouldn't elaborate until the bronchioscopy and biopsies were performed, which confirmed Blastomycosis after four months of misdiagnosis.

  • I am glad that Derek made it as well. I am a Blastomycosis survivor too. I was already a paraplegic, but not from the Blastomycosis. I was mistreated from 02/06 to 05/06, first my doc treated it as a cold w/persistant cough, which progressed to treatment to flu w/cough and blood, to chronic bronchitis, and eventual hospitalization for pneumonia (all wrong diagnosis). When I got out, I started having small lesions on my skin, and she started treating for staph.

  • I also had Blasto in 2005. I really enjoyed your beautiful video. I went through the Sporanox, but it didn't work for me. I had to get Anfatericen (sp) in an IV everyday for 2 months. I'm so pleased he is doing well, what a brave young man, you must be so proud.

  • It is called amphoteracin B

    Looks like oineapple juice.

    It is really hard on the kidneys.

    My son finally needed to be put on VFend

    (Voriconazole) also very hard on the system.

    His treatment cost approx. $40,000, but he would not have survived without it.

    Did you have blasto in your central nervous system or your lungs?

  • I've been through the disease (twice)and i can honestly say that Derek is a true fighter,although i went through hell and was hospitalized with Blasto my heart goes out to this little guy !Keep up the fight Derek,you are my hero!

    Dean Hunter

  • Thanks Dean !

    It is one hell of a disease to battle, but we are sure glad Derek made it through.

    Sorry you had to endure it as well. We are happy to hear that you are feeling better.

  • It's great to see that your son is doing better. I was diagnosed with blastomycosis in May of this year, after nearly 3 months of misdiagnosis. Do you know of any support groups for people with blasto? I live in north west Wisconsin. Thank you.

  • My Heart goes out to you. I just survived a five month battle with this horrible infection.

  • Where was your infection?

    How long did it take the Dr.'s to diagnose you?

  • My lungs. 4 weeks, If I had worked 1 more day I would have died at work. My PCP did no blood tests, and fed me steroids for 3 of the 4 weeks. It was a horrible summer. I spent 3 monthes in a coma, and I am still learning to walk.

  • My lungs. 4 weeks. I was in a coma for 3 months, and now I still have problems walking. I had staph and pnuemonia at the same time. I weighed 205 lbs now I weigh 170.

  • Hmmmm

    They mistreated Derek with steroids, too.

    Almost killed him.

    By the time they treated him, he was almost dead - a result of the immunosupression and the Blasto.

    It moved into his spine and he could not walk - had to learn again.

    Where are you from?

  • A small town in Illinois. You know I can't imagine being that young and going through what Derek went through. I kind of chalked my Illness up to karma. Maybe this is for all the times I took for granted the things in life that I shouldn't have. My 8 year old daughter tells me that this isn't the case. How long did Derek have to take sporonox? I have to until Chistmas day. Derek's is an amazing young man, and you are just as amazing!!!!

  • Hi I survived Blasto to! They had givin me steroids as well. Which made the infection a thousand times worse. I spent 2 months in a coma on life support. The night I went in the Dr told my wife to call in the family that I would not make it through the night. Glad to see your son made it through Thank God. Blasto is Scary!!!!!!!!

  • Yes, it is scary.

    I am glad you made it through!

    It was similar for us, as the Dr.s asked me to "make arrangements" for my son as he was "going in the wrong direction".

    He is alright and escaped being a parapalegic.

    His pituitary gland succumbed to the infection and he needs life-sustaining horonmone thrapy for the rest of his life.

    What area are you from?

  • Comment removed

  • derek is my hero! my name is alex..im 20yo and im from montreal..i spat blood once..and spent several nights in the hospital..i went thru numerous scans...blood samples and even a pet scan..then they decided to operate me..and found out i had a histoplasmosis or blastomycosis scar in my lung!!!

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